When I started writing this blog – just about a year and a half ago, give or take – I was the mother of two typically developing boys in a family with no dietary restrictions whatsoever. Or so I thought.

A few months after beginning RRG, I found out that my older child, L., was not typically developing. He has Sensory Processing Disorder and a motor planning disability. His lifelong aversion to fruits and “wet” textures suddenly made sense, along with a host of other things. I was…I don’t want to say devastated, because truthfully, I wasn’t. I was relieved to know that there was a name for what was going on, and that there were things to be done about it, and although it’s not all rainbows and sunshine to find out that your kid has a hidden disability, I knew that L. was the same old loveable, wonderful L. he’d always been – problems or no problems. J. and I digested the news and did what we were told we should do for him, and we moved on. Life continued. The sky never did totally fall, even if it felt like it might sometimes, and L. has sailed along developing just about as well as I guess we can expect that he will. He flourishes in some areas and flounders in others. He’s great.

So after that, we became the parents of one typically developing child, and one atypical child, and we still had no dietary restrictions of any kind. I would think about it from time to time – the “what if?” – because after being thrust very actively into the world of parenting a child with special needs, your bubble feels as though it has both narrowed and expanded. In some ways, it’s smaller than before, because in those early days it can feel just as if you’re tunneling underground – digging a burrow in which you, your child, and all the doctors and experts and therapists will hide out together, and where the parents and children who are free of such concerns can’t survive. Your vision becomes totally focused on the goal, and the goal is helping your kid, even if it’s to the exclusion and detriment of things like laundry. Or showering. But in other ways, there’s an expansion taking place. You get to see deeply and intimately how much little things matter, and how much better off you’ve got it than the other families you notice (or even sort of befriend) in the waiting room at therapy. So many of the families I’d see when I hung out with L. at OT/PT were caught up in dietary needs – feeding tubes, liquid diets, teaching to self-feed, managing multiple severe allergies, you name it. And it made me think.

I remained thankful that we didn’t have to deal with any of that, right up until a few months ago, when J. and I realized once and for all that we could no longer ignore P.’s intolerance to food dyes. If you’re keeping track, that means that in the space of less than a year and a half, I went from parenting two typical children with no dietary needs, to parenting one atypical child with no dietary needs and one typical child with a noticeable food intolerance. Sigh. I didn’t mind cutting out dyes from P.’s diet – especially since we don’t approve of them and don’t serve foods in our home that contain dyes anyway – but managing the issue outside of our home environment has been a learning curve that gave me fresh insight into the special hell that is the world of a food allergy parent.

But then we got on top of the dye thing, and it started to feel pretty easy. I was just thankful that food dyes were my only foray into restricted diets and that I didn’t have to worry about any of the HARD stuff. Like peanuts. Or dairy. Or gluten.

Dear Universe: WTF already?

This week, we took L. to a specialist because I wanted to follow up on some advice I’d gotten about maybe supplementing his diet with some fatty acids, among other things. He’s still doing great, but with Kindergarten coming up in the fall and some problems persisting even though J. and I both felt he’d conquered those phases, it seemed like a good idea to take another step towards making sure we looked into every possible avenue to keep him functioning at his best level. In other words, I had that sort of weird gnawing Mommy sense that there was something else that needed to be done for my kid, and I went skipping off to go find it. Unfortunately, while I found the specialist who would help us with the fatty acids and the probiotics and so forth, I also found that she wanted us to eliminate all gluten and casein from L.’s diet.

It’s only for a trial period (at least right now; who knows, long-term?). Six weeks. Forty-two days. Not that I’m counting.

But let’s recap, shall we? In just over a year and a half, I’ve suddenly taken a sharp left turn and become the parent of a typically developing child with a food intolerance (which, given that he’s also allergic to sunscreen and has been since infancy, probably means he’s got an overall chemical sensitivity), AND a child with asynchronous development who now, at least for the time being, has to be on a GF/CF diet.

It’s sort of a lot to take in.

I started with panic. Lots and lots of panic. I wasn’t equipped for this. I, frankly and selfishly, did not WANT to go GF/CF with L.’s diet. Not even for “just” six weeks. Not for a WEEK, for Pete’s sake.

It’s not the diet. I’ll be honest. If I really examine how I was feeling a few days ago, as this information began to sink in and J. looked me in the eyes and said “You know we’re doing this, right?” What I was feeling was more a sense of rueful cosmic mockery. I wanted to shake my fist at somebody and go, “Oh, come on. REALLY?” Really? After all the time I’ve spent trying to learn about food and investing in feeding my family as well as I can, after all the effort, after everything that’s gone into crafting our food routines in this household, now you want to throw me one of the most cursed curveballs in the food intolerance world? HAVEN’T I DONE ENOUGH ALREADY?

I’m over it now, I think. After four days of this newness, I’m feeling calmer. Of course the first thing I did, after shakily receiving J.’s reassurances that “If anyone can do this, you can,” was hit the grocery store near my office on lunch break so I could stock up on a handful of items to make the first week easier. Almond milk – check. Gluten-free pancake mix, for emergencies – check. Organic popcorn crisps for a school snack – check. And, to be completely honest, a box of Rice Chex cereal. No, ordinarily, I don’t buy boxed cereals for the boys. And I’m not sure how proud I am of the purchase. But I knew L. was familiar with Chex from school and elsewhere, and it made me feel better to pick up something that would seem sort of normal to him while I was feeling food-haywire.

I started to realize in a tangible sense why some parents take the “easy” route to feeding.

I’m determined not to let this experience be defined by that box of Chex, though. I have no way of knowing, right now, whether he’ll have to swear off gluten and/or casein in the long term, or whether we’ll be lucky enough to discover six weeks from now that the elimination period was all he had to go through. On Day One, I was planning to approach this as a short-term thing, and vowed not to go crazy buying special products or trying to bake gluten-free bread; but then again, I’m not the kind of person who can go half-in for much of anything. If we’re going to be GF/CF for six weeks, six months, or six years, we’re going to do it the best we can. I’m not going to let Chex cereal and GF/CF convenience foods become my crutch.

So for the next 42 days (38 now!), I’ll be experimenting. By God, I WILL bake, and I WILL figure out some ways to make this whole GF/CF curveball into an experience that may almost approach something resembling fun. Already I’m encouraged by little things: L.’s discovery, for example, that he loves almond milk; the realization that coconut milk makes smoothies taste better than dairy milk; the fact that, rather than missing the snacks his school provides, L. has declared himself happy to finally have Mommy packing him special snacks that are “much better.” (Kicking myself, by the way. Had I known before that it would be this easy to get him off the crackers and stuff his friends eat at school, I would have started sending his snacks years ago.) It can only get better from here, I keep telling myself.

After all, I’m a pretty accomplished home cook and an awesomely formidable Momma Bear when I have to be. How hard can Dye-Free, Gluten-Free, and Casein-Free possibly be?

*Whimper.* Only time (38 days is NOTHING, right? Five and a half weeks? NOTHING!) will tell.

Preheat oven to 375 degrees. Lightly grease a cookie sheet.
Add the oil to the pancake mix and stir thoroughly. Gradually add the nondairy milk, stirring, until the mixture is fully moistened but not liquid. You should be able to form the mixture into balls that just barely hold their shape, and are somewhat sticky.
Using a quarter-cup measure, drop the biscuits onto the prepared cookie sheet, patting them down slightly to smooth the tops. You should get 6 biscuits from this mix. Bake the biscuits at 375 degrees for 15 minutes, until set and lightly browned.

21 Responses to DF, GF, CF, WTF?

Can you share what changes your doctor hopes to see in your son by going GF & CF for 6 weeks? I know I am commenting late on this post – I read it on Handpicked Nation today. My daughter just turned 5 in March. She sounds very similar to your son – SPD, dyspraxia, low muscle tone, poor core balance, amazing memory – in fact, your description of him in your Sept 2010 post pretty much fits her to a T, including inability to swing a swing, hold a pencil/crayon properly, cut with scissors, do a puzzle, etc. She receives OT twice a week & continues to make improvements, but I have often wondered if there is anything we could eliminate from her diet that would help matters. We are not a NO processed food family, but we are a LITTLE processed food family. 🙂 Anyway, back to my original question, did the doctor expect to see large enough changes in behavior/skills after six weeks that you would know if GF & CF should be continued long-term? I guess you are 3 or 4 weeks into the trial period now – is it helping? Like you, I am always reading, researching, trying to figure out the best ways to help my daughter. One final question, you referenced wanting to try fatty acids – have you by any chance started using Omega? I have debated this, as well. Thanks for letting me ramble on here, one fellow SPD parent to another. 🙂

Hi Stephanie! I’m so glad you reached out. 🙂 SPD parents — all special-needs parents, really! — do need to stick together. Your daughter sounds SO much like L.
OK, so the VERY brief rundown as I understand it is that L. may have a “leaky gut” that is exacerbating his symptoms. He had a very long course of antibiotics as an infant that may have wiped out his gut immunity and created some gaps of permeability that allow proteins like gluten and casein to seep through into his bloodstream and cause some problems, like brain fog and poor coordination, etc. — some of the hallmarks of the SPD issues. The naturopath is looking for improved energy, improved clarity, improved motor coordination and mood stability, as well as some changes in his bathroom habits. (Not something I want to detail here!) 🙂 We will really have better ability to tell whether or not this is helping, as I understand it, when we do a rechallenge — adding gluten and casein back into his diet after the 6 weeks and seeing whether he regresses or has any visible symptoms.
It’s a very hard call. We are not seeing enormous changes in him. The changes we have seen, mainly an uptick in energy and focus, happened within the first day or two — which makes me think that they may be due to the Omega supplementation and probiotic that we put him on at the same time as starting this diet. The naturopath we saw gave us very high-grade fatty acid supplements and high-grade probiotics. Anyway, we’re continuing to the end of the 6 weeks and then we will see. It’s very possible that his digestive system just needed a break, basically, and some support to heal…which we’ve been trying to provide. It’s a journey. But like you, I feel responsible to leave no stone unturned to help him function at his best.
And no worries about “rambling.” Come on over and ramble anytime, or “like” RRG on Facebook and ramble there, or email me at redroundorgreen(at)gmail(dot)com and ramble there. 🙂

Thanks for the detailed response. I think going GF & CF for a while is something we will pursue, although definitely waiting until the summer as she currently goes to a daily pre-K at a school for children with “learning differences” (dyslexia, SPD, autism spectrum, etc). Also, I work full-time & my hubby is the stay-at-home, so I need to make sure he is 100% on board. 🙂 And let me just say, I hear you on “bathroom habits” – another similarity b/w them that makes me thing GF & CF might be helpful for her, too. And she is also “L” – so funny! Do you follow SPD Connect on FB? I have found that community to be very helpful & encouraging. I’m glad I found your blog & am looking forward to following you going forward.

Thanks, Stephanie! Looking forward to having you hang around here, too. 🙂 I feel like the GF/CF thing is one of those stones that should be turned if your kid has any of the concerns that our kids have; and that being said, it doesn’t work for everyone the way it does for some. If you do decide to go that route, feel free to ask questions and share here!

To expand your lunch options especially, try looking in raw food or paleo diet recipe sites. The two types of diet are generally grain and milk free by default, so they overlap significantly with a gluten and casein free diet (though they do NOT overlap much with each other)!

Thanks, Uly! I’ll definitely be checking out paleo sites, etc. So far L.’s feedback to me has been that “everything I’ve been eating is really good, Mommy,” so I know he’s not feeling particularly deprived — but I bet in a couple of weeks’ time, he’ll start to want more variety!

This has been a huge crater in the road for you! But you can do it, and you will do it. Do not beat yourself up if you hit and miss some, that happens. As mom we do what we must, but I will agree with you going this route is scary, and it is irritating…I will say it, it is irritating to have to change everything that you have known. Now that it is said, go forward and do the best you can, that is all anyone can ask of you. Blessings….

Thanks, Rachael! I really appreciate the support. We’re doing great, almost a week in…and I’m actually sort of excited about the new tricks I’m learning. But yes, there is DEFINITELY some irritation involved in trying to take an about-face, especially for an inveterate bread-baker like me!

I can feel your pain! When mine kiddos were small, the middle one had a food dye sensitivity that lead her to have “the itchies” everyday by noon, and screaming fits lasting until she finally fell asleep for the night. The learning curve for no dye cooking was crazy because I did not want her to lose out on things her older sister could eat. As a consequence, I can make a vast number of ridiculous sweets and candies from scratch. Lollipops & marshmallows, anyone?!

Then last year I did 6 weeks GF/CF. Oh, it was a world I was not prepared for! Physically I felt great, better than I can ever remember, but socially the toll was so high that I did not keep it up over the long haul. The one real issue I could never overcome: What about communion at church? You input on that would be most helpful. :^)

Hey, Amy! Thanks so much for commenting, and for your prayers. 🙂 Obviously communion at church isn’t such a big deal for L., since he’s not old enough to be upstairs to receive it…but I would think that the church could find a unique way around gluten sensitivity in much the same way that we long ago embraced grape juice over wine in deference to those who struggle with alcohol consumption, no? Perhaps a gluten-free bread option could be consecrated along with the regular old stuff if there’s a known need in the congregation? I bet those with celiac, etc. would even be happy to provide that for themselves, if they knew that it would be an accepted part of the communion service. In a small congregation like ours especially it mightn’t be difficult…

There are gluten free wafers which can be used for communion. You’ll have to check to see if your denomination allows it, or allows you to skip the wafer entirely and just have the wine/juice/blood of Christ. Most religious groups accept that health needs come first. I don’t want to judge, but I would suggest that any group that does not take your physical needs and health seriously is not acting in your best interests and it may be a sign that, ultimately, you’ll have to switch churches.

Oh wow. I was wondering what the CF was in their lunches today….. As you know, we’ve been dairy free for about 2 weeks now. It was pretty overwhelming at first (thinking about it), but when we started actually *doing* it, it wasn’t all that bad. As a matter of fact it seems to help make some better choices in the end. I did the same as you, ran to the store, stocked up on some “safe” alternatives and then quickly started searching for recipes for snacks and meals.

Even though we are not vegan, those recipes are great for the CF part, not all will help with the GF, but I know you’ll be okay.

Sometimes I think hardships are designed to build compassion in us. I know it has in me.

Good job on your dietary switch, too, Tamara! I love what you said about hardships building compassion in us. You’re so right. I also think…you know what? If I didn’t have constant reminders of why this is SO IMPORTANT, this knowing about our food thing, maybe I wouldn’t be so driven to share and learn and keep going. You know? It’s a new opportunity to learn more things that I might not have learned before, and to try some new foods and so forth that I might not have bothered with. Complacency in anything is not good, so having this come along to rock our world…maybe not such a bad thing after all.

Thank you for sharing all of this. The only thing that’s harder than processing that initial diagnosis for your kids is telling other people that something is happening, trying to explain what is going on while making it clear that you’re all okay. Really okay. Really. Okay.

Don’t beat yourself up about that Chex, Mamma Bear. L. and P. are lucky to have parents who are so dedicated to searching out the best for them, and doing whatever it takes to make sure that they have every opportunity to grow and thrive and be well.

Thanks, Jennifer! We’re okay. Really okay. Really really. 🙂 *deep breaths*
I’m letting the Chex go. 🙂 They’re gone anyway (testament to how much the kids liked them, drat the luck) and I didn’t replace them. Homemade granola is as big a hit, if not bigger, so I’m planning to just keep replenishing that supply as much as possible for the foreseeable future, supplemented with single-ingredient brown rice cereal and whatever other breakfast options I can get them interested in at the moment. Coconut milk smoothies also seem to be a big hit, so maybe we’ll ramp those up in the mornings. Anyway, I’m stable! I swear!

Congrats on the biscuits and I’m personally proud of you. I knew that once the foodie in you kicked-in, you’d see it as a test of your mad skillz (and maybe even fun “challenge”) more than a death sentence for everything you know and hold dear.
One more bit of unsolicited advice (and this somewhat comes from experience). If it were me, I wouldn’t take the “If he’s got to eat GF, we’re all going to eat GF,” thing too seriously. It’s wonderful to show him support and try to make him feel “normal” during the transition and it’s also important (for practical reasons) to not become a short-order chef at family mealtimes. However, should it last more than the 6 weeks, it’s also HIS “different ability” that he needs to learn to live with and adapt to and it needs to not come with the expectation that the rest of the world is going to conform to his needs. He’ll also need to learn to identify what he can and can’t accept from others. People are going to eat cookies and cake and God-knows-what in his presence and offer them to him and he’ll need learn to be okay with that (seems he already is, thanks to your hard work on his taste buds prior to this!). I’d say the very same thing about a diabetic or someone who’s lactose intolerant.
Just as importantly, don’t deprive yourselves of the treats you CAN have just to set a good example for him (or feel like you need to sneak them out of his sight). Nothing will make you more frustrated with his diet than the restrictions it places on you and that’s just silly if it’s totally unnecessary. There’s no reason he can’t have his biscuits while you eat your “regular” ones–or cookies, or tofu cheese, or whatever.

Thanks, Justin! Don’t worry — we’re “sneaking” our gluten and casein when we can. 😉 I sort of feel guilty about it, having that whole “If he can’t have it I shouldn’t either” feeling, but J. has convinced me that there’s no reason to avoid it assiduously. You’re right that if it does end up being permanent, he’ll have to navigate it and advocate for himself, which is something I do believe in strongly. So if we have to cross that bridge, we’ll have to see about having a sort of “blended household” with gluten and dairy! 🙂